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A hero amongst family

10-year-old Newton boy with Crohn’s disease to be recognized at June walk

By Christopher Braunschweig
Newton Daily News

April 22, 2019

Christopher Braunschweig/Daily News

Caption

From left, Seth and Michelle Banwell and their three sons, 10-year-old Kaden, 3-year-old Tysen and 13-year-old Lance enjoy the outdoors Saturday morning. Kaden Banwell, who was diagnosed with moderate to severe Crohn's disease, was selected as the Honored Hero for the Iowa Take Steps Walk organized by the Crohn's & Colitis Foundation.

Every hero needs a sidekick, someone to watch his or her back when things get real tough, a dedicated support system that’s always there when needed.

For Kaden Banwell, a 10-year-old Newton boy who will be recognized as the Honored Hero during the Iowa Take Steps Walk for the Crohn’s & Colitis Foundation June 1 in Des Moines, his sidekick is a diligent and caring family that fought multiple misdiagnoses and an uncooperative insurance company to ensure their son received the right treatment.

Now, almost two years after Kaden was officially diagnosed with Crohn’s disease, a chronic inflammatory bowel disorder in which the body’s immune system often attacks the gastrointestinal tract, the biggest challenge that lies ahead for Kaden’s Caped Crusaders is making sure the boy is ready to share his story and his mission to the public the day of the walk.

Is the young hero prepared to take on this task?

Although he is rather shy and tends to avoid the attention, Kaden is still very much a champion for further research efforts of Crohn’s disease and ulcerative colitis in hopes of one day finding cures. The way Kaden and his family see it, if he can withstand those early symptoms, then he can certainly speak to a few folks about his experiences and his bravery when combating Crohn’s disease at such a young age.

Kaden had been sick for several months before he received a correct diagnosis. Doctors had no idea what was afflicting the boy and causing him so much discomfort and pain. At first they thought he had a virus, suggesting to Kaden’s parents, Seth and Michelle Banwell, the illness might go away in time and with enough rest.

But the belly aches and the abdominal irritations persisted, resulting in many sleepless nights and a loss of appetite for the middle son of the Banwell family. His mother knew something was terribly wrong when her growing boy was only requesting egg sandwiches for his meals. Near constant vomiting didn’t help, either.

“Even then he would take a couple bites and be done,” Michelle said. “We said, ‘This is not right.’”

Kaden added, “It hurt really bad. It just turned on and off. For a little while it would hurt constantly and then for a little while it would just stop.”

A visit to the emergency room — one of many, the Banwells said — ended with a prescription for acid reflux medication, which did nothing. Drastic weight loss only exacerbated the family’s worries. At one point Kaden weighed 46 pounds and had developed deep shadows under his eyes. The Banwells recalled being able to easily wrap their thumb and middle finger around his biceps.

A subsequent set of nonsurgical procedures revealed Kaden had moderate to severe Crohn’s disease affecting the middle portion of his intestinal tract. Finally, the Banwell family was getting some answers.

‘Powerless’ to help

Even though the problem had been identified, Kaden’s battle was far from over. A gastrointestinal doctor recommended he be given regular infliximab IV infusions, but the family’s request for this treatment was denied by their insurance company.

Seth said he and his wife were “a nervous wreck” and felt completely “powerless” to the situation. They finally knew what was troubling their son. They had made it this far, only to be told “no” to their preferred treatment.

“Because our doctor (knew) and we knew what the best thing was for him,” he added. “We had somebody outside that wanted to try less expensive meds just to save money when we knew the right step was this medicine that is more expensive ... This is what he really needs, but the insurance company wanted him to try and fail at other things.”

The Banwell family’s frustrations prompted them to contact state legislators and med agencies to get involved. Upon receiving the denial letter, Michelle said, “This is stupid! Why would they make kids go through this whole hassle when they’ve gone through all of these other tests and misdiagnoses and prolong this whole nasty process? They should be kids and having fun. We got a little forceful with the process.”

Seth and Michelle filed formal complaints to their insurance company, but they were told they would likely not get their appeal response heard for another two months. The insurance company was backlogged. That wasn’t good enough nor soon enough.

“My son is dying right now because he is not getting any nutrition,” Michelle told insurance company officials, who assured her they understood how the family felt. “Then you should be helping me. This shouldn’t be good enough for you either.”

Contacting their gastrointestinal doctor helped expedite the appeal process. Not long afterward, the Banwell family received approval for their desired medication for as long as Kaden needed it.

“But this whole process took three weeks, and, in my opinion, it shouldn’t have had to take that long,” Michelle said. “We shouldn’t have had to fight that hard. That was a frustrating process.”

Today, treatment measures are in full effect. Every six weeks, Kaden takes one day off from his schoolwork and spends it at the hospital receiving an infliximab IV infusion. Kaden has almost doubled his weight since his first infusion. He has also grown four inches taller. He said he feels “like normal again,” able to enjoy his pastimes once more.

“It felt great,” Kaden said of his first infusion. “I stopped hurting.”

But there is a drawback. Seth said Kaden will need infusions “for the rest of his life” unless an advanced treatment proves more effective or a cure is found. Furthermore, there is a chance the effects of the infusions will become diluted. Seeing his own mother battle Crohn’s disease “for years and years and years,” Seth noted there has been much progress since the 1990s. Kaden, he said, is benefiting from those advancements.

For now, Kaden is no longer pacing around his bedroom to get his mind off the pain, nor is he spending most of his nights in restless discomfort or eating a few bites of egg sandwiches. He gets to be a kid again. The medicine, his dad said, is working.

“And we want to keep it that way,” Seth said.

The next step

One might call Kaden an unexpected hero. Rather than enduring all those uncomfortable tests to identify exactly what was wrong, the boy would have loved nothing more than to perform Legend of Zelda theme songs on the piano, play video games with his 13-year-old eldest brother Lance or be a big brother to his youngest sibling Tysen, age 3.

Kaden’s agonizing journey, beginning at a young age and leading up to the eventual relief of regular infusion treatments, caught the attention of Amanda Hall, a community manager representing the Iowa/Nebraska chapter of the Crohn’s & Colitis Foundation, who nominated Kaden to become one of the nonprofit organization’s Honored Heroes.

The recognition corresponds with the nonprofit’s Take Steps walks across the country, which serve to raise awareness of Crohn’s disease and ulcerative colitis. Honored Heroes share their unique stories with the community in hopes of one day finding a cure and improving the quality of life of people living with these two diseases, which is the core mission of the Crohn’s & Colitis Foundation.

Hall met the Banwells in 2017 and noted their efforts in researching and advocating for Crohn’s disease as strong qualities for the organization’s Honored Hero title.

Crohn’s & Colitis Foundation, Hall added, was created in 1967 and has about 39 chapters throughout the United States. Crohn’s disease, she said, can impact “every aspect of someone’s life,” which, if left untreated, can lead to severe complications.

“Illnesses vary from person to person, so no two people are going to have the same disease path,” Hall said. “And it’s awfully tough to predict whether one person will develop complications versus the next. We’ve gotten a little better with kids. Pediatric RISK Stratification Study is kind of wrapping up, but that’s been a big effort for us to identify kids that are at a higher risk for developing complications.”

Stigmas or misconceptions about Crohn’s disease are common, she added. Hall, whose husband and mother-in-law both have Crohn’s, said people likely think inflammation is purely driven by diet and can be solved through certain multivitamins because the disease is not as well known to the public.

“That’s an area we’re researching though,” she said. “We have several dietary studies ... For our family, (the impact of Crohn’s disease) literally affected everything. There was a point where we had to decide which we wanted to pay. Do we pay for my husband’s infusions because my insurance didn’t cover them or do we fix our car?”

Although cases of Crohn’s disease can be unique in how they occur or how they ultimately affect the individual, the overall impact of the illness on the person and their support system feels very similar. Oftentimes the disease is not talked about as heavily, Hall said, because the symptoms — such as frequent diarrhea, rectal bleeding and cramping, for instance — are seen as unpleasant.

“There are more people who are living with Crohn’s or colitis than anybody wants to realize,” Hall told the Newton Daily News. “We think that 1 in 100 people are living with Crohn’s or colitis. So even in the Newton community, I bet you a dime and a dollar Kaden is not the only one. There are probably other people out there living with these diseases, and we are here to support them. Even from afar.”

Kaden concurred, “You aren’t alone.”

Leading up to the Des Moines walk, Kaden has a goal is on his personal Crohn’s & Colitis Foundation page to reach $5,000 to donate to the organization and further research. People can still donate before June 1.